I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Thursday, December 17, 2009

Carnival of MS Bloggers #51

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Elusive Diagnosis

My head spins. So many differing opinions, so many docs, so many shifting symptoms, so many labels, so many possible overlapping reasons, so many experimental protocols, just one me. Always just a smidge outside the box. I'm envious of those with neat tidy labels. Yet realize the label doesn't always come with a solution. My head spins.

My desk is full of journal articles and website print-outs. Some carefully read, highlighted, and pondered. Others awaiting good intentions to manifest into action. My bookmarks bar is full of folders with links -- antiviral protocols, antibiotic therapy, brain exercises, ccsvi. The new doc is better than most -- we've had a couple visits. She acknowledges that we need a specialist in a certain area that's not so common. She's stumped for now but promises to look around. Maybe both do our homework and reconvene again in three months? My head spins.

I've decided that after two years of denting my couch I'm diagnosing myself. Ok, so the two years were complicated with some surgery distractions, but still, I want a diagnosis. Yes, I definitely appear to have chronic neuroimmune wonk. Yes, wonk. That should suffice. Guess I should get a cpt code to go along with that.

On the first day of Christmas my MS gave to me,
1 life time of misereeeee.

On the second day of Christmas my MS gave to me,
2 frozen feet,
and a life time of misereeee.

On the third day of Christmas my MS gave to me,
3 hours of sleep,
2 frozen feet, and a life time of misereeee.

On the fourth day of Christmas my MS gave to me,
4 stiff limbs,
3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the fifth day of Christmas my MS gave to me,
5 itchy spots,
4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the sixth day of Christmas my MS gave to me,
6 morning meds,
5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the seventh day of Christmas my MS gave to me,
7 night meds,
6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the eighth day of Christmas my MS gave to me,
8 new aches and pains,
7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the ninth day of Christmas my MS gave to me,
9 assistive devices,
8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the tenth day of Christmas my MS gave to me,
10 year old I can't keep up with,
9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

On the eleventh day of Christmas my MS gave to me,
11 jerks and twitches,
10 year old I can't keep up with, 9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a lifetime of misereee.

On the twelfth day of Christmas my MS gave to me,
12 things I can't remember,
11 jerks and twitches, 10 year old I can't keep up with, 9 assistive devices, 8 new aches and pains, 7 night meds, 6 morning meds, 5 itchy spots, 4 stiff limbs, 3 hours of sleep, 2 frozen feet, and a life time of misereee.

I love my nephews and I love my brother and sister-in-law. In fact, I am thrilled that I was able to spend some quality time with them this week after the previously-mentioned funeral. I don't get to see my brother's family but in a blue moon of blue moons (it seems).

I have had fun...but I am beyond exhausted. Honestly, I wonder how exactly folks with MS deal with having active and energetic families.

One of the things which really disturbed me the most during the first years after diagnosis was my concern and fear as to how I could ever have my own family. I remember when I couldn't use my hands (due to yet-to-be diagnosed RA) and thought that there was absolutely NO WAY I could ever care for a baby since I couldn't even care for myself. I have also had times where I couldn't use my left arm for anything which required weightbearing or fine coordination.

In my personal relationship, we have discussed over the years having children and both of us have had a desire to do so....eventually. Well this past spring, I discussed this possibility with my rheumatologist who gave me directions as to how I must be off of methotrexate for at least 3 months before even trying. Just to see how this would affect me, I stopped methotrexate for a measly two weeks before the RA pain started to come racing back.

The pain I had as the RA truly flared up at its greatest (still undiagnosed at the time) was so excruciating that Rob almost took me to the ER in the middle of the night once because the pain was so tremendous and frightened us both. Neither of us want to get back to that point again....EVER.

But one thing which I had not experienced so greatly during my previous visits here was just how sound has affected my MS body. It's been 2 years since I last visited and during these 2 years, my MS has progressed and relapsed to the point that my doctors and I are using Rituxan to treat both the RA and MS.

I know that I am sound-sensitive just as I am heat-sensitive. At home, I keep the TV volume low (if it is on at all) and avoid loud situations. I enjoy my quiet time, but most importantly, I NEED my quiet time.

Quiet has been a serious deficit this week with four boys in this house - aged 2, 6, 8, and 37. This is a family which loves its TV, DVDs, video games, and chaos. I like some of this stuff too, but in moderation, not in a constant over-load.

Today, my poor MS body had had enough. The input level was extreme as the sound reverberated around in my head. Sounds tend to echo and persist as the auditory nerves are sluggish for me. Also, sounds tend to send waves of pain throughout my body. The most simple way to explain this (to the boys) might be to describe the sensation which happens when you hit your "funny bone." I get that all over.

Also, as my nerves reach overload, I lose function. Not just mental abilities but physical abilities too. Today, my body had had ENOUGH!!

As I was trying to type a message to a friend, I saw my right hand in dramatic tremors. I've had very small, almost not-noticeable tremors in my right hand and right foot before. Basically, only me or an examining doctor would witness them previously. This time, my hand tremor resembled ones which you might notice in Parkinson's patients.

I had already been having a horrible time with spasticity and coordination walking on-and-off during these recent days. It's not a relapse going on, but my body simply reacting to the various situations. I can tell the difference because rest helps to better the deficiencies, as does extra baclofen and small doses of xanax.

Earlier today, my Mom (who is also here visiting) spent some time rubbing the spastic knots in my calves. It was extremely painful but did help to alleviate some of the coordination issues arising from muscles too tied up to work properly. Before that the pain from the noise and spasticity, the frustration of coordination issues including tremors, and the inability to think and speak straight caused me to breakdown crying.

It hurt so much in so many ways. My brother and sister-in-law don't know how to handle my crying, apparently. During previous visits, I've cried a bit because I miss out on so much of my nephews' lives and that saddens me. I've cried because my brother has been rude and stern before towards me. I've cried because I have depression and deal with that frequently.

Today I cried because I was in excruciating pain and frustrated by what having this disease has done to me. I hate it!! I hate MS!! I feel like I miss out on so much life because of it...and I'm highly functioning at that.

Although, the local Walmart store had the better of me the other day. I was having trouble walking straight after making too many circles around different areas. I was going slow and drifting to the left as my legs were like heavy concrete slabs. Drop me in a lake and I would have sunk to the bottom.

As I was looking for the benches in front of the pharmacy (where my sister-in-law works), a man in a shopping cart scooter made a comment about stopping so that I wouldn't wander into his cart as I was "drifting and daydreaming about." Thankfully, I was too tired to even truly respond because I'm sure that - "so sorry to be in your way, but I have MS and really should have grabbed one of those carts for myself on the way in the store. I'm not daydreaming; I'm trying not to fall down with a leg which is dragging nor walk into any of the displays. So please pardon me while I painstakingly and slowly make my way to those benches over there." - probably wouldn't have gone over too well.

Back to the crying this afternoon. Instead of asking me what was wrong, my sister-in-law called for the boys to go upstairs and she kept them there. That's often what happens if I cry, I'm left in isolation by my brother or his family. They don't know how to deal with it. Whether than allowing for a learning moment for both the young ones and the adults, it's "let's withdraw ourselves and punish Lisa for showing emotion, no matter what the reason for it is. Let's not ask what is wrong (which might create an opportunity to fix it), let's just all withdraw and disappear. If she cries, let's abandon her."

Today is not the first time, I've been suddenly 'abandoned' after showing emotion in their house before. Other times I would have said to the boys (if asked), "I just love you so much and feel sad that I am not here to see you often." Today I would have said, "I have this disease which makes me hurt when there is alot of sound and noise, or which makes my body not work right all of the time when I walk or use my hands."

What a better opportunity to teach my nephews (and their parents) some of the things which are different for me than for other people. My sister-in-law is a pharmacist so she should be exposed to the pharmacological aspects of the disease. My brother is a licensed therapist so he should be aware of the emotional and physical aspects of the disease.

But as you know first hand, even our doctors don't truly understand everything there is to know about living with this disease. The nurses and physical therapists who specialize in MS probably understand the greatest. But we know that others with MS who have been at similar disability levels to ourselves probably understand the greatest.

So here's my question to readers - do you also experience extreme pain and loss of function from something as simple as an overload (or chaos) of auditory and visual input? Should we start thinking of this as an official cause for a pseudoexacerbation? What do you think? I'd like to hear from you. (Comments here)

This concludes the 51st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 31, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 29, 2009.
Thank you.

P.S. I remember someone (not included above) sent me a link for a blogpost to be included, but alas I couldn't find that email...and I don't remember who it was. My apologies to the person who I left out.